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ANY advice on HEADACHES??

Home Demo forums Patient Message Board ANY advice on HEADACHES??


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    Kathy Lynch

    Has anyone found a way to treat their almost daily headaches??? Any advice from their docs?
    I have headaches just about everyday… I can handle the constant feeling tired but the headaches are really getting to me.

    I see my doc in a couple of weeks but would love to hear from my fellow MDS gang 😉

    Lee Warner

    Kathy, I am sorry to hear that, as it appears headaches can be a side effect of azacitidine. My husband has “low risk” MDS, 5q deletion. He’s been on Vidaza / azacitidine for 22 months after Procrit failed and Revlimid produced a severe skin reaction. He has ice pick headaches, stabbing pain in and behind his eyes and forehead. Mayo neurology finds no “reason” for these, and offers only over-the-counter pain relief, avoiding NSAIDs such as aspirin; recommending Tylenol.

    Along with intense fatigue, labored breathing, and constant tiredness, these headaches are so hard to endure. But, after consulting with Mayo, it appears to us – not Mayo – that azacitidine may be the cause, and Tylenol pain relief right now is the only remedy.

    Please do post here if you learn more about these headaches. We wish you well with your treatment.

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